Kidney Cancer Bloggers Have your Say

James Whale Fund Patient Day: Salford Quays, Manchester
15 June 2011
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Following the success of the Fund’s Patient Days in 2009 and 2010, the programme has been extended to several Patient Days in 2011.

There were well attended Patient Days in Cardiff, Swansea and Carmarthen in March this year and there are more to come: at The Lowry Centre, Salford Quays, Manchester M50 3AZ on Wednesday 15 June, in Glasgow on Wednesday 5 October and in the South East on Wednesday 16 November.

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Have you recently been diagnosed with kidney cancer?

Would you like to learn more about kidney cancer and treatments for kidney cancer direct from the experts?

Are you interested in meeting other kidney cancer patients with or those who have received treatment and recovered?

Would you like more information about the support available to kidney cancer patients and their families?
Then come and be part of our Patient Day at The Lowry Centre, Salford Quays, Manchester.

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Agenda
Professor Robert Hawkins, Cancer Research UK Professor and Director of Medical Oncology at the University of Manchester and the Christie Hospital NHS Trust, will chair the Day.

He will also be giving the plenary presentation on his very exciting research with high dose interleukin-2 (HD IL-2), sequential treatment and new treatment options for kidney cancer.

The day also includes presentations on kidney cancer surgery, radiotherapy, the work of the clinical nurse specialist, patient support and the James Whale Fund nurse training programme. In the afternoon, there will be an interactive Question and Answer session with some of the UK’s leading kidney cancer specialists.

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Register now for the event in Salford Quays by completing the registration form online

Click here for patients and carers (FREE)

Click here for professionals (@£55) or

email Sarah Ridge or

Ring 0844 474 5050 between 10am-4pm and ask for a Manchester Patient Day registration form.

Patients and family members are FREE to attend! (Reasonable travel expenses for patients and their families will be paid for by the James Whale Fund).

Click this link for your tranport options to the The Lowry Centre, Salford Quays,

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Other Patient Days
If you have been unable to attend Patient Days held already this year, and cannot attend our Manchester Day, we are holding two further events this year:

Wednesday 5 October in Glasgow (venue to be announced).
Wednesday 16 November in the South East (venue to be announced).

The format and content of each Patient Day will be similar, but with different speakers.

We look forward to welcoming you to one of our Patient Days this year!

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Posted under Events

Rose Woodward – Patient Advocate

At long last…… confirmation that the

Cancer Drugs Fund to get £200m a year  

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Posted under Afinitor(aka Everolimus/RAD001), Avastin, Campaigns, Cancer Drugs, General, N.I.C.E., Nexavar, Patient Day 17thNov2010, Rose Woodward, Social Medicine, Torisel

What a great evening we all had last night at “Le Raj” in Epsom Downs. The food was fantastic, the staff were excellent and I can’t believe that Enam Ali gave all of this for free! which meant all the money raised went to the Fund directly.

I cant remember the exact total that Chris Tarrant and Shane Richie raised in the auction at the end of the meal but they’re clearly used to doing this kind of stuff and used all their guile to eek out every last penny from the diners. The bids went way beyond my wallet capacity.

So, was a Chris Tarrant the same person off screen as he is on screen? I asked if he minded me taking a photo, you make up your own minds……

One of the bids got very confusing, it started as “A days archery with James Whale and a few of his friends” and ended up as (and this is my best guess) “A day with Shane Richie dressed as Robin Hood in the forest with the person bidding dressed, (or not), as Lady Godiva on horseback”. Anyway money has changed hands now, promises have been made and photographers are on standby, so good luck with that one Sandy! And let’s hope it’s a warm day!

As usual the James Whale Fund team did an excellent job of pulling this all together, they do it with such ease now it all seems second nature, although I’m sure Sarah would say something different.

Great night out! Thanks.

All the money raised goes towards helping fund initiatives for Kidney Cancer such as the Nurses Training Courses and the Patient Day on the 17th November

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Posted under Andy Thomas, Patient Day 17thNov2010

Make a note of this date in your diary 17th November. Why? Well first off it’s my birthday! But secondly the James Whale Fund is holding another Patient Day and (for the first time) a Nurses Study Day.

It seems a while since the last James Whale Fund patient day, but this one is almost upon us, so if you want to be part of it then make sure you register on-line at The James Whale Fund Web-Site.

The last one was a huge success and this one promises to be even better with more topics and discussions specifically for the patient and carer. I always love these things because it’s a great excuse to meet people face to face, we spend so much of our time on-line and I think it’s so much nicer to know who you’re talking to across the Internet.

I also look forward to hearing about the outcome of the first IKCC meeting (International Kidney Cancer Coalition) it’s good to see other organisations around the world getting round the table to share knowledge and experiences.

On top of the patient day a Nurses Study Day will be held at the same time and location and if you want more details of that then go to The James Whale Fund Web-Site.

There have been lots of fundraising events this year and it’s great to see the money is being put to best use and the focus is fully on the patient with days like these.

I hope to see you all there in November. My special dietary requirement for the day is “Birthday Cake”!

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

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Posted under Andy Thomas, Patient Day 17thNov2010

Rose Woodward……….. www.kidneycancersupportnetwork.co.uk

Just finishing the presentations for the 1st ever International Kidney Cancer Conference for Patient Groups to be held in Frankfurt next weekend…leaving on Thursday and the Conference is Friday , Saturday and Sunday so I will be returning home on Monday…. I think this is going to be so valuable – we have all worked very hard to make it happen and the support has been tremendous.

We have invited every single Kidney Cancer Patient Organisation we know about to attend and we will have representatives from 16 Countries meeting with us;  UK, Germany, Canada, Africa, Australia, India, Eastern Europe, USA  etc and it has been great to see their enthusiasm for the project.  Our leading renal Clinicians have been very supportive of our starting up this type of Coalition  which was desperately needed and we are lucky with those who have chosen to attend and talk to us about their work, This is a patient led patient orientated initiative. We thought of it , we set about making it happen .

 By Patients for Patients about Patients !!

We have a very basic start – up website here… have a look.

 I’m so looking forward to meeting everyone, It was wonderful to meet Ken Youner and Jay Bitkower  and Gilles Frydman earlier in the year when we set-up the organising committee.  Markus Wartenburg and Dr Marion Beier have been doing so much work to make this happen.  Deb Maskens and I have been working together on some presentations – quite a double act !!! I joked to say we should hire ourselves out  for wedding, birthdays and BarMitzvahs for fundraising  !!

More to come !

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Posted under Events, General, Rose Woodward

If you are in the nightmare situation of having to fight to get treatment for Kidney cancer – please don’t think you have to do this on your own – we can help you and we will . We have many friends who are themselves patients and carers and family members who can talk with you and hold your hand to help you get through the appalling situation you find yourself in.

If your Oncologist wishes to prescribe treatment for your Kidney Cancer and yet your Local Health Authority ( England – Primary Care Trust -PCT or Wales and Scotland a Local Health Board – LHB ) refuses to provide funding then please email Rose and Julia at contact@kidneycancersupportnetwork.co.uk; we can provide expert advice, individual letters and contacts to lead you through the process and help you understand the policies and how you can challenge the system to make sure you have the best chance possible to get access to the best available treatments.

Julia and Rose have been helping cancer patients in 100′s of PCT’s to get access to proven and effective kidney cancer treatments for nearly 4 long years, sadly here we are 4 years down the line and the NHS are still refusing to provide active cancer treatment to desperately ill kidney cancer patients – we are fighting exactly the same battles now as 4 years ago.

In this day and age it is scandalous that patients not only have to fight their diagnosis of cancer, but they have to use vital time and energy battling with the very organisations that are meant to care for us. We are passionate believers in the NHS and universal care but how can we stand by and let administrators and managers decide who to treat and who not to treat. The decision whether and how to treat patients MUST be made by Oncoligists/Clinicians in Hospitals and not adminstrators sitting behind desks in PCT Offices. We cannot turn our back on our fellow cancer patients and watch them and their families suffer because “the system” will not allow new and innovative, clinically effective treatments to be prescribed to NHS patients.

We are not running a  business, we don’t even have a bank account and we certainly  don’t take money from the Pharmacuetical companies who make the drugs patients need. We are able to do it because we are helped by the James Whale Fund for Kidney Cancer Charity. All over the UK  patients and families donate money, leave legacies and run marathons, hold coffee mornings, curry parties , cycle on fundraisers   to make sure this vital  help is always there for the next person who needs it.  But Julia and I  also do it because we have to;  because  as cancer patients ourselves, we understand  what facing an uncertain future means  and the last thing on your mind should be whether your Doctor will be “allowed ” to prescribe you the treatment  you need in order to keep you alive.

NHS Constitution…….1st paragraph…….The NHS belongs to the people.
It is there to improve our health and well-being, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

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Posted under Arch To Arc 2010, Britain's Biggest Curry Party, Campaigns, Cancer Drugs, Fund Raising, N.I.C.E., Rose Woodward, Uncategorized

Nearly a year has passed since we started this forum and nearly a year since we all started working together – Andy Thomas and his marvellous kidney Cancer Resource, Clive Stone and his inspirational “Justice for kidney Cancer Patients”, Julia Black , and I with the Kidney Cancer Support network, our lovely Jane Thompson with the Jane’s Journey film, Bill Savage and his work with N I C E and the Cancer Networks … so many people joined together with a common aim to try and make a better, easier world for the kidney Cancer Patients who come after us – I think we have succeeded in our small way and I just know the work will continue.

Huge thanks is due to all our friends at the James Whale Fund for kidney Cancer especially to James Whale for giving us his energy and the chance to make a difference . Nick Turkentine for his skill and professionalism and bringing together such a good cohesive team and Sarah – organiser extraordinaire – for looking out for us all and making things happen !!! and to Jo, Nikki, Sharon, Paul, Malcolm and the rest of the gang who do such good work for to improve the lot of kidney cancer patients – Thank you from the bottom of my heart.

We have started some projects this year which should help change the way Kidney Cancer Patients receive their treatment in the future. We had a KC patient delegate at all the major political party conferences this year seeking to raise awareness of kidney Cancer with Politicians and reinforce the need for additional treatment options. We started the online Kidney Cancer Nursing Course for Urology CNS’s which will give them additional skills and knowledge specific to kidney cancer. We have had expressions of interest in joining the James Whale Fund for Kidney Cancer Medical Advisory Board and we already work in partnership with many of the leading renal Oncologists in the UK. We have produced updated patient information leaflets, produced “ U Tube” videos and learning tools and our aim is to continue this area of work.

Globally on behalf of the Fund I have been working with friends from Canada & Germany to bring together patient advocates from various KC groups from around the world to form a coalition to promote research and provide a stronger voice for patients. The James Whale Fund for Kidney Cancer has been talking to the Regulatory bodies in the UK and the EU to make sure we get a place at the table whenever Kidney Cancer is on the Agenda.

And of course many of us met up at the 1st James Whale Fund Kidney Cancer Patient Day in London November, this was a great day with patients working alongside expert renal Clinicians and according to the feedback was a huge success and will be an annual event in the future.

As well as all the above we have continued to support individual patients & local KC patient groups ( and we still need many more). We have provided feedback to the Pharmaceutical companies about patient information, and worked with the NHS to provide a kidney cancer patient perspective at various training days and conferences for nurses and Clinicians.

So all in all it’s been quite a year. If any of the above inspires you – please do get in touch because we always need more volunteers as there seems to be so much going on and so few hours to do it in !!!

As always we have had our low points and I have lost some very dear friends to this awful disease; friends who played an important role in securing the approval of Sunitinib our first N I C E approved drug to treat metastatic disease; patients like Ken Potts, Jean Murphy, Stephen Dallison, Kathleen Devonport, Kay Hopkins, David Basey and sadly many more.

It’s because we have to change things and ensure other patients never have to go through what these patients endured that we will work even harder in 2010 to make sure we get the best possible treatment approved for everyone who needs it.

We have some wonderful Clinicians working alongside us, and lots of people like those mentioned above prepared to give up their time to help us . In short we are making a difference and so we shall keep on keeping on.

I hope everyone has a lovely day tomorrow, but of course we know it will be a difficult time for others who will be missing husbands or wives, mothers or fathers so at some point tomorrow please raise your glass to our absent friends.

My wish is for everyone to have a Healthy and Peaceful 2010,

With love from Rose Woodward

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Posted under Cancer Drugs, General, Oxford Support Group Demonstration 27-Aug-08, Patient Day 18thNov2009, Rose Woodward

Those of you who came to the James Whale Patient Day in London see  www.jameswhalefund.org  in November will have great memories of the inspiring talk from my friends Deb and Tony who came all the way from Canada to talk to us and what a talk it was !!! Everyone was staggered by their tales of fighting this disease and establishing Canada’s first Kidney Cancer Supprt organisation.

Yesterday I reveived this note from them…………

Four videos of Canadian kidney cancer patients and caregivers have just been uploaded to

http://www.youtube.com/user/KidneyCancerCanada

These videos provide not only valuable disease specific information, but also hope and inspiration for those fighting this rare form of cancer.

KCC would like to share these videos with as many people as possible, and welcomes the opportunity to connect with your organization/blog/website through these videos or other content that you would like to share.

Here is a brief description of the videos:

Tony Clark – “Live with the disease”

Tony Clark talks about how he is living a full productive life with kidney cancer by using sequential treatment therapies. Tony is the Chair of Kidney Cancer Canada.

Deb Maskens – “Live life in the present”

Deb Maskens talks about how she is fighting stage 4 metastatic kidney cancer through participating in a clinical trial. Deb Maskens is the Vice Chair of Kidney Cancer Canada.

Karen Ross – “Live the days that you have”

Karen Ross talks about her life experiences as caregiver to kidney cancer patient and husband David Ross. Karen is also Kidney Cancer Canada’s volunteer Director for New Brunswick.

Wally Vogel – “Anatomy of hope”

Wally Vogel was diagnosed with stage 4 metastatic kidney cancer and given only a few months to live. Because of new kidney cancer treatments becoming available Wally is alive and well today with no evidence of disease (NED).

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Posted under Cancer Drugs, Events, General, Patient Day 18thNov2009, Rose Woodward

Well back home in Cornwall at last and catching after going up to Colchester to see my Dad straight from the James Whale Fund for Kidney Cancer Day in London on the 18th Nov.

What a great day – nearly 100 people !!!!! We were soooo pleased to see so many patients and carers and nurses from all over and some people travelled quite a way to be with us. But everyone said it was worth every ounce of effort and some of the comments from patients were very touching. One family who had travelled quite a way after a recent diagnosis said it had changed the way they were thinking about the disease and they felt they were not alone because they now had faces to put to names, had made friends and so they did’nt feel so alone anymore.

I just have to say the work and effort the James Whale Kidney Cancer Team put into the day was nothing short of amazing. It was a great venue; so near the underground tube station and the facilities at the Science Museum were first rate. Lunch was lovely, even allowing for my silly teeth following work in the dentist chair a few days previously, I thought the catering and the choice offered was superb, I know there were so many of us that we had to form an orderly queue for lunch but even that was useful because it gave us a chance to talk to other patients who we may not have met. I noticed a bit of nudging to get to the cakes in the afternoon and I have an endearing memory of Mr Turkentine, the Chief Executive of the James Whale Fund being stopped by so many people in the afternoon he missed the cakes and tea.. !!!

The James Whale Fund for Kidney Cancer fundraising stand inside the door with all the badges, Kidney cancer christmas cards and KC gifts on display, the welcome pack was so carefully thought out and the chance to sit in comfort if you needed a break was well planned. We knew there would be cancer patients at different stages of the kidney cancer journey attending and being able to relax away from the hustle of the main lecture room was a really good idea.

We had presentations from Prof Tim Eisen, Dr Paul Nathan and Dr Tom Powles and Debbie Victor the Uro/oncology nurse . A really good question and answer session, good chat and lots of hugging and air( and not so air)  kissing – whoo hoo  

So much to talk about and I know lots of people had more questions for the panel at the end which we didn’t have time to cover. For anyone who hasn’t completed their “Feedback/evaluation form” send it back to James Whale Fund   or go to our Forum at www.kidneycancersupportnetwork.co.uk  please do  send it back to us because there is the opportunity of that form to ask our speakers any questions.

I think it is important that when we do something like the Kidney Cancer Patient Day, we make it special, if we have patients & families travelling distances to be with us, then considering it is a first for many people, we have to make it worthwhile and we have to show the Healthcare professionals who came that we are serious about patients being put first and I ‘m convinced that means a good venue, good speakers, welcoming atmosphere and making sure we did the right things and gave people what they want from a day like that.

But a huge thank you to Sarah Ridge & Sharon  who put so much effort into to making the day such a success, to all our speakers, and especially fellow patients and wonderful friends Deb & Tony from Canada( we knew it would be good….. but that good !!!!) and to everyone who who joined us and made the day really memorable.

It was quite a day !!!!!!!!!!!!!!!

One thing I have to say is that there  were lots of people I wished could have been with us, not to be too maudlin but we have lost a lot of lovely friends to this awful disease  this year. I said a little private Hello to many of them because I know they would have been proud of what we did that day.

Take

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Posted under General, Patient Day 18thNov2009, Rose Woodward

It was an inspirational day last Wednesday at the James Whale Fund for Kidney Cancer’s Patient Day.  I’ve never been to a patient day before and I wasn’t sure what to expect really.  I knew it would be a great opportunity to meet people in a similar position and a great day to network in general.  All of that turned out to be true.

What really got me was that the specialists that turned up to talk were so willing to answer our questions, and there were a lot of questions.   It must be hard and I was especially impressed that they’d given up their time like this.  It was insightful.  If the Q & A session at the end had been allowed to go on I’m pretty sure we’d still all be there.

We also had an inspiring talk from the Kidney Cancer of Canada people (Debbie and Tony), what they have achieved in a short space of time is astounding and it shows what can be done if we all work together.  The biggest lesson for me from the whole day is that if all the different Kidney Cancer groups were to come together in the UK then we could achieve even more.  One of my biggest concerns is that in the UK we are a bit diluted, but we are gradually bringing organisations and people together and the Patient Day was a great example of this.  My belief is that we’ll get things done quicker that way and make a bigger impression.

I took about 6 pages of notes during the day but I wont start trying to detail them out because I know the James Whale Fund will be sending out a newsletter with the same information.

For me I just wanted to say a big thank you to the team that put this together, it all went off without a hitch and was well organised with a good balance of speakers and topics.

What have I learned? Well I know we still have to fight on for the right to the drugs that are so badly needed and yet are still denied by NICE.  If the oncologists that came along to our event feel they are not listened to then it’s even more important that we all join together in the UK and take this to NICE directly.

This blog wont do the day justice I know, but my hope is that another one will be held soon.  I came away feeling that this was the catalyst to something new and exciting for Kidney Cancer in the UK, the more we bring people together like this the more we can achieve.

Please sponsor us at either VirginGiving or JustGiving

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Posted under Andy Thomas, General, Patient Day 18thNov2009